Info on RP and Ushers

Some info I compiled from online about Retinitis Pigmentosa (the vision portion of my disease):




What kind of vision do people have who have retinitis pigmentosa?

People who have retinitis pigmentosa see things from the center of their eyes. They may see details in good light. They have trouble seeing anything in dim light. They may not notice things moving to the side. They may bump into things or trip on things. They do not see things to the side or down below or up above. Sometimes they feel like they are looking through a tube or a tunnel. People call this “tunnel vision.” It may take longer for people who have retinitis pigmentosa to see again when they go from bright light to dim light or from dim light to bright light. Persons with retinitis pigmentosa can be disturbed by photophobia. Light falling directly into the eyes causes dazzle. Light coloured surfaces may also reflect enough to disturb vision. Decreased contrast sensitivity is a common feature of retinitis pigmentosa and several other eye diseases. It means that the person does not see faint shadows, (s)he needs high contrast in order to see.

My comments:
This is why I no longer can drive. My field has narrowed significantly and I wasn't noticing things happening around me.
My vision is continuously deteriorating so I am in training to prepare for the eventual lose of most of my useful sight.
I see pieces of people instead of all of them. This goes for other objects as well.
I see blinding light in clear strong sunlight.
I see nothing in the dark. No shadows.

Ushers interview:
Here's a link for an interview on the Today Show about a woman with Ushers syndrome. She's very much like me and says a lot of insightful things. She has the same fears and talks about them very well. It's a very informative video that will help you see what it's like from my perspective.

http://today.msnbc.msn.com/id/26184891/vp/29741456#29790193
click on the video called "facing a rare disorder with courage." There's another one called "It's like slowly being taken from this world."

Perspectives and links

I found another blog where someone posted the following about Ushers:

"To most it's the stuff of nightmares; as one father wrote on his blog after reading about the condition while researching what might have caused his son's deafness: 'Usher syndrome gave me the experience that the cliche calls 'chilled to the marrow'. It's a cold start, a real glimpse of horror.'"

It's an interesting perspective. I'm not sure I would say that I am chilled to the bone by my genetic condition. I mean I have it and I'm learning to live with it. The process of losing my eyesight and possibly more of my hearing is not fun and I wouldn't wish it on anyone, but it's my life. It's my reality. It's not that bad. The part that is hard for me to deal with is the fact that I am limited because I can't drive. I want to go to grad school for my Ph-D but I'm not sure I will be able to because I have no transportation. I have applied and we'll see what happens, but will I be able to accept the position? I absolutely abhor the limitations placed on my by Ushers syndrome but not the disease itself.

It is scarey and most people can't fathom what it is like to have a dual sensory loss. But the part that they really can't understand is the limitations put on me by a world that does not accept the disabled very easily. I am capable of doing many things but I am not able because in a world that relies on mobility I don't fit. Of course I am working on changing that for myself.

Another woodshop video

Another day

Today kinda started out bad and I had a pretty sour attitude but as it progressed I shaped up. I suppose that I am human too and can have bad moments just like everyone else. I am working on being gentler with myself. It's ok if I don't get everything right away. For Pete's sakes reading braille with your fingers is a whole different ball game than doing math or something for me. It's ok to be patient with me. Now hopefully I can put that into practice b/c I have been way to hard on myself.

Travel is usually the class lately that I don't like and am nervous about, but today went much better. We did a route that wasn't super taxing so I could be a little more explorative and work on a few techniques I have trouble with. I felt much more confident after today than I have in a long time with my cane travel skills. I even forced myself not to cheat when I thought I was going to be hit by a car. Reality was I was stuck in the bus loop, not the street. Hard to tell when you can't see your surroundings. Since I was hollering and being whinny about it my instructor chose to ignore me and then came over to get me when a bus was coming. He was like "I am not going to deal with any yelling. I will just ignore you unless you are in real danger." Good thing I'm sure. We talked over how I could better figure things out rather than throwing my hands up (with cane attached) and yelling "where am I?" for the whole world to hear. Man he has a lot to put up with with me as his student. I definitely make him earn his paycheck. LOL!!!

Woodshop video

I had videos taken during woodshop. I am cutting out the base for my trivet project. I am not a big fan of table saws but the way my instructor has taught me to be safe with them leaves me less afraid of the saw. It was always the one saw I hated in my remodeling and woodworking adventures as a sighted person. Now it's not so bad even without sight. The blade can only be an eight above your cutting surface and a push block is very important so your hand doesn't go into the blade. My instructor is spotting me so that the piece will stay straight. The second video is the mental prep that went into bravely cutting something without seeing. I did well handling my nerves!!! LOL!!!

Ok can I complain a little?

I have to say I am so irritated with this so called thing called "clicks." I know this isn't a blindness issue and that everyone else probably feels the same way as I, but do clicks have to exist everywhere I go. Schools, churches, work, and now even at the Colorado Center for the Blind. It's so annoying how a few people have adopted this "I'm too cool and good for you" attitude. Oh please...is this high school. Apparently so!!! Well considering most of them just got out of high school with the exception of one that is applying for a doctoral program. Actually they are generally nice alone but in the group setting they are kinda snobbish. What am I? Dog food!!! It shouldn't bother me so much but I really wish I didn't have to deal with this attitude thingy going on while learning to figure out my new life. Well I'm not a cool person b/c I'm a nerdy mathematician that knows PI to ten decimal places....well in that case WHO CARES!!! I like being a nerdy mathematician that likes such bizarre things like science. LOL!!!
I know it bothers a lot of other students that they are shunned from this group, but I find that the "shunned" students have such amazing character and class anyways. I have become good friends with a number of them and wouldn't trade that with some "cool" classification that will die off anyways. These are friendships that have shown me some valuable insight into myself and life in general. We all seem to try taking a more positive worldview despite our struggles. We all have such strength as we push through what we are standing up against.

We all go through our tears of sorrow and frustration, but in the end we are still standing, and that is what counts!!!

As hard as it is I don't think I would trade who I am or who I have become or even these difficult experiences, b/c it has made me stronger. I have a feeling God knows what he is doing!!! [I may not agree with these words all the time but for the most part I think I do.]

Graduation

One of my close friends graduated today. Even though we only knew each other for a month we had a good time around each other. I really enjoyed her company. Anyways she finished her big meal for 50 that is done on graduation day. Also finished her mega monster route early this week. It's a trip we have to plan out and make for a day that involves four city locations to visit, catching all of the transit required for it, and meeting everyone at a restaurant of choice. She picked the Ave. Grill in Denver. It was pretty stressful but she did it. Also to graduate we are required to do complete a project in technology, organizational skills, a 30 page braille recipe book for home management, a mini meal for 15, a woodworking project, a braille project, the monster route for travel, a support drop in the middle of the city, a drop alone in the city, and then our final meal for 50. I am most nervous about the drops. We are dropped somewhere, can only ask one question, and need to find our way back to the center.

This program is definitely a very intense training program and requires a lot out of us. It's very good for me to have high expectations placed on me in order to be prepared to do anything I put my mind too as a blind person. Going to graduate school for a doctorate in Biophysics will demand a lot, even more as a blind person. I know I can handle the academics behind it, but I will also know that I can handle the affects blindness will have on me as well. It's a confidence building program, but it can also feel discouraging as we are muddling our way through. We just can't give up b/c we can do it. I know that given what I have faced in my life as a hearing impaired individual and, overcome, I can now do the same thing with blindness.

Good Luck out in the world Shelby! I will treasure our time together!!!!